tips and tricks
This is a area where you can search and add ‘tips and tricks’ in dealing with living with MND. You can add your own, comment on others or just vote on how good you found it. You don’t have to register but it needs your input to work for others.
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saliva dibbles
I have a miracle semi cure for you. My dearest friend was given it by Hospice Nurse and it has given great relief.
I have purchased some and find them so so good (but expensive too!)
It is Scopoderm TTS 1.5 in the form of patches to go behind ear. Here in Kiwi land there are 2 in packet, each one stays on for 3 days and $23.99 per pack.
they are really are for travel sickness and major side affect is dry mouth!!! It doesn't make my mouth too dry and I still dribble sometimes.8 votes -
sleeping
satin sheets with satin/silk pjamers and then place a 'slippery sam' under you… then you can move or be moved with little effort
5 votes -
pill choking
if pill sticks in your throat and you cannot bring it back up... swallow bits of dry bread.
3 votes -
Hands free help - alarms
St John's can be adapted for people unable to use their hands.mnd nz newsletter December 2008
3 votes -
drinking
a metal straw in hot drinks prevent burning and taste better! They can be purchased at most homeware stores as cocktail straws
3 votes -
wheelchair trousers
katmandu do a light weight trouser that are very comfortable and can be turned into shorts while sitting. it's nice not to wear track pants. elastic waste.
3 votes -
coffee cups
when you get frustrated by the straw moving or stuck at the bottom.... buy empty takeaway coffee cups with lids.... place straw in sip opening... and problem solved!!!
3 votes -
Management of sputum
if it is sticky try fresh pineapple juice, propranolol 10mg twice a day -works by blocking adrenergic ef-fects, gabapenton has been used (drowsy, fall over side effects). If it is copious - Botox can be useful into parotid glands (thin) or sub-mandibular (thick).-mnd nz newsletter December 2008
2 votes -
uridome
For those men with MND who wear a uridome for ease of toiletting when out and about or home alone. Sometimes there can be problems with the uridome slipping off. Some men have tried a sticky tape to keep the uridome on but this can be uncomfortable and/or unreliable. Bill suggests using those disposable pants used for incontinence sufferers (eg Tena) with a small hole cut in the front for the uridomes tubing to pass on its way to the leg bag. I understand there is funding available for continence products for eligible patients.
2 votes -
toilet seat
Toilet with bulit-in electric bidet and dryer plus seat warmer
In Japan almost every house hold have this as well as many shops, restaurants, department stores etc. We have been using this soon after Stephen got diagnosed with MND and found it very helpful. You don't have to change the whole toilet just replace the seat and cover. It costs $990. More details, please go to www.royalet.com.au2 votes -
securing blankets
We had trouble with heavy blankets falling to one side of the hospital bed and hubby unable to lift them back. The good old Terry saved the day. The correct sized terry clip fits exactly over the tubular hospital bed rails. He cant stand the blankets weight on his feet so I use 3 terry clips to hold the sheet and blankets securely at the end of the bed and 2 per rail on either side of the bed, no more slipping blankets....cheap and for us effective. Cant go wrong trialling it if you need because if it doesnt work… more
2 votes -
antibiotics
Infection is so serious for MND sufferers. If you can't swallow tablets, ask your GP to prescribe powdered antibiotics. This allows you to have it on hand when required and not have to run off to an after hours doctor (if its a weekend etc) for a prescription if things aren't looking so good. It has worked well for us and it can be stored for quite some time. Just requires mixing with water and shaking well and hey presto ready to go.
2 votes -
nasal prongs
We had so many issues with hubbys bi-pap but more specifically the full mask. Left horrible bruising on the bridge of his nose and around the perimeter of the mask itself. We so reccomend that if you still have mobility in your arms and hands that you ask your breathing nurse/whoever organised your bipap or cpap to try nasal prongs instead. Allows you to eat, talk, drink etc while on your machine. Reason we say if you have mobility in arms and hands is it does need adjusting from time to time and its the reason hubby has been able… more
1 vote -
drinking equipment
Have just discovered what looks to be the perfect solution to those of us with problems drinking because of poor sucking ability, called the Drinkup System, available from the UK only, check their web site. http://www.drinkup.uk.com/index.asp
(ozpals dec09)1 vote -
free talking software
ETRILOQUIST
http://www.etriloquist.com/or
Gaze talk
http://www.cogain.org/downloads/1 vote -
Neck braces and supports
n Neck braces and supports - vari¬ous types are available including soft and hard collars and other sup¬ports that work by supporting the forehead. Different types can be found by going http://www.ossur.com/bracesandsupports/neckandspine/hospitalandrehabilitation/collars/miamij - that is the one used by one client and he finds it extremely good. He travels a lot and says he just couldn't manage without it.- mnd nz newsletter December 2008
1 vote -
Hoist
get on to your occupational therapist and insist - absolutely INSIST -on getting a stand up hoist!! It makes transferring so easy and right now you really want to make things as easy as possible!! Because it iseasier on you all round. The way it works is that you just drive up to it in your wheelchair and then your feet are move onto a platform and strapped in, a sticky fabric sling goes around your back and hooks you in and then there is a handle that you can hold on to for stability and hey presto , you… more
1 vote -
Phylem
Bisolvon tablets thin the phlegm while dark Grape juice brings it up. I
use kiwi fruit in emergencies when the phlegm is too thick and won't shift.
But best of all NAC dries it up. You have to buy NAC online from America.. I
get mine from iherb.com and take one a day. Pawpaw enzyme tablets also help
but not as good.
-From Ozpals-0 votes -
Neck Support
A piece of open cell foam (available from Clark Rubber) cut with a carving knifeto a comfortable shape then covered with a normal satin pillow case works too.
0 votes -
constipation
Allan was always a 'once or twice a week' bowel man but ofcourse, as you know, that is not a good thing when your mobiility is compromised. As a result, we have put a lot of effort into making sure that he goes when the opportunity arises which is every morning when he gets up. We achieve this very well with a regime of two Laxol tabs at night and first thing in the morning he has a drink of Mucilax (Orange favoured, otherwise it is yukky). If he takes too long to get going once he is over the… more
0 votes
